New Horizons Un-Limited Inc.

National

Birth Defect Research for Children, Inc. (BDRC) is a non-profit organization that provides parents and expectant parents with information about birth defects and support services for their children. BDRC has a parent-matching program that links families who have children with similar birth defects. BDRC also sponsors the National Birth Defect Registry, a research project that studies associations between birth defects and exposures to radiation, medication, alcohol, smoking, chemicals, pesticides, lead, mercury, dioxin and other environmental toxins. Their website offers a wealth of information and points you towards many other helpful resources. For more information, visit their website.

International Birth Defects Information Systems is a website dedicated to Birth Defects, Genetics and Teratology. The site offers information for patients and professionals, factsSheets for families and providers, overviews of basic and clinical research, the latest news, and links to support groups.

March of Dimes researchers, volunteers, educators, outreach workers and advocates work together to give all babies a fighting chance against the threats to their health: prematurity, birth defects, and low birthweight. The March of Dimes helps pregnant women know what to worry about and what not to worry about when it comes to having a healthy baby. Through their Pregnancy & Newborn Health Education Center women can get free one-on-one, confidential answers to their questions about pregnancy, preconception, newborn screening and related topics. This on-line center offers a special section on birth defects and genetic conditions. For more information, contact your local chapter.

National Birth Defects Prevention Network has a mission to establish and maintain a national network of state and population-based programs for birth defects surveillance and research to assess the impact of birth defects upon children, families, and health care; to identify factors that can be used to develop primary prevention strategies; and to assist families and their providers in secondary disabilities prevention.

National Center on Birth Defects and Developmental Disabilities seeks to promote optimal fetal, infant, and child development, prevent birth defects and childhood developmental disabilities, and enhance the quality of life and prevent secondary conditions among children, adolescents, and adults who are living with a disability. They offer an informative website covering a wide range of developmental disabilities. For more information, call (770) 488-7150 or e-mail bddi@cdc.gov.

Countries

United Kingdom

SWAN UK (Syndromes Without A Name) is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. It is run by the charity Genetic Alliance UK. It is estimated that around 6,000 children are born every year with a syndrome without a name. Their Big Ambition is that every family affected by a syndrome without a name has the support they need, when they need it, regardless of whether they have a diagnosis or not. They want it recognised that being undiagnosed is not always a temporary stage; the genetic cause of some conditions may never be known. They want every child and young adult with a syndrome without a name to receive high-quality coordinated care and support, both in hospital and at home.

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